Friday, 15 November 2013

Opening my eyes

Last weekend I had a bit of a cry, not because Stardust upset me, quite the contrary really.  I just felt this painful overwhelming sadness for him.  He has so many things to work on, so much he finds challenging and I was sitting thinking about how amazing he is and how hard life can be and I just could not stop sobbing.  I have never sobbed for him like this before.  Like I said I am full of positivity and I look to the future.  This day I was thinking forward but I was also just thinking how hard everything is for him and it really is not fair.  It sucks.  Like seriously sucks. 

I sometimes get a bit weighed down with people saying how lucky Stardust is. Lucky why?  There is nothing lucky about his situation.   I feel like shouting, hollering and bawling from the rooftops when people say that, I find it offensive.   They don’t understand, they really don’t get it, his life has been full blown toughness. He has fought more than most of us will in a lifetime, in a system that really had no time or inclination to find him.  He has had to work on building up a resilience that would out shine the sun because he knows how much he hurts and upsets people when he becomes aggressive.  To bounce back from that and keep going is incredible.  He cannot read and he cannot write yet he keeps trying, he keeps trying because he desperately wants to know.  Stardust has intrinsic motivation for sure, he is riding the wave.   He helped me find my passion – I found it because of him.  I am lucky not Stardust.

This week has been an eye opener for me.  Stardust seems to be moving quickly, his problem solving skills have been flying out of him at the supersonic speed of light.  Reassured and content that we are 100% definitely doing the right thing.
When you use the approach we do, nothing happens fast and you often feel almost like you are moving in slow motion.  Every now and then there is a glimpse at how good life could be for Stardust in the future.  He is tirelessly working at putting all of the skills that he has taught himself into practice.

This week there have been three groundbreaking incidences that have left my heart fluttering and caused drip drop tears to stream down my face. 
One of these was on Sunday.  Every year we have a bit of a drama around advent calendars as Stardust loves Lego and he has always had a Lego advent calendar.  The problem is they cause stress.  He has to open all of the windows right at the beginning as he cannot wait, which is fine, it is his calendar and he can do with it what he likes.  He then has to build the pieces and put them back, sometimes bits get lost and then he just erupts and lava bellows out of him.  He feels frustrated because he has peeked and is generally fed up. This year I have been a bit undecided about which calendar to go for...Star Wars or Lego city so I asked Stardust which he would prefer.  He sat for a minute, I could see his brain tick tocking away and he said ‘I don’t prefer either’.  I assumed in my daftness that they must’ve brought out another so said ‘oh ok which one were hoping for?’  He replied very clearly and said ‘none at all, I don’t want any.  They make me feel annoyed and this year I will do without’.  I was flabbergasted.   He has worked out that it makes him feel so anxious he just does not want to entertain it. I love this.  I think it is incredible. I am thinking at the back of my head he will change his mind before the 1st of December but time will tell.  If he does that is fine, he has spent time thinking about it and how he will cope and that is all I can hope for.

We had another eureka moment when Stardust had a feeling of massive frustration.  He was hoping to download a video onto his ipad before he left the house and we were hurrying.  He couldn’t find it and started tensing up and clenching his fists.  This is Stardust’s stimming action.  He goes into hyper mode and just gets lost in a world he has to pull himself out of.  It is a dangerous place to be and as soon as his hands go you know that the inevitable will happen.  This day it didn’t; I however had resigned myself to the fact he was going to blow (which on reflection was shocking).  He threw his ipad on to a bag and said he wasn’t going out.  He then ran into another room and sat on the sofa for a maximum of 20 seconds.  I was a bit stressed to be honest as I wanted him to walk out of the door happy as can be and I was way is he going to.  Amazing progress – movements that make the earth move....he came out of the room with the sofa and said these words. ‘Never mind I can watch another video, it doesn’t really matter’.  He left the house happy.  He worked it out. He did it all on his own.

Today we have had a bit of a hyper morning.  Stardust loves computer games and we pre-ordered Lego Marvel for his Wii U what seems like an eternity ago.  In his brain and in his way of working things out he knew it was due to come today.  It did arrive this morning when he was having an Occupational therapy session.  It banged like a brick through the letterbox and he heard it and ran.  He saw the box and knew straight away what it was, so we let him open it.  He had a look and then said to his therapist he would play it later, he was doing therapy and he would wait.  He worked it out. He did it all on his own.

I know to many these things sound so unimportant and pretty much insignificant.  Nothing is ever a given with Stardust so these things are really important and really significant.  They show leaps and bounds of progress.  They help us to confirm that his brain is starting to work things out and they really show us all that Stardust always does the best he can - this we knew but to have affirmation of it is reassuring.  I am feeling pretty pleased with these big steps he has made this week.  Stardust responds to the way we work with him because: we respect him and trust him to do the right thing.  I know this is because we do not sanction, we do not reward and this gives him the opportunity to really work things through.  Removing items, taking children out of situations without giving them a chance to suss it out for themselves is unhelpful at best.  How will internal coping ever occur?  It doesn’t – it is controlled coping and this is never good.  I am looking miles into the future and helping him to lay down foundations for success. We will keep going, we will get there, I know we will.




  1. Significant milestones indeed. You have every reason to feel proud. Thanks for sharing.

  2. Thanks Marisa - lots of love xx